RT Journal
A1 McGuire, Amy L.
A1 Basford, Melissa
A1 Dressler, Lynn G.
A1 Fullerton, Stephanie M.
A1 Koenig, Barbara A.
A1 Li, Rongling
A1 McCarty, Cathy A.
A1 Ramos, Erin
A1 Smith, Maureen E.
A1 Somkin, Carol P.
A1 Waudby, Carol
A1 Wolf, Wendy A.
A1 Clayton, Ellen Wright
T1 Ethical and practical challenges of sharing data from genome-wide association studies: The eMERGE Consortium experience
JF Genome Research 
JO Genome Research 
YR 2011 
FD July 01 
VO 21 
IS 7 
SP 1001 
OP 1007 
DO 10.1101/gr.120329.111 
UL http://genome.cshlp.org/content/21/7/1001.abstract 
AB In 2007, the National Human Genome Research Institute (NHGRI) established the Electronic MEdical Records and GEnomics (eMERGE) Consortium (www.gwas.net) to develop, disseminate, and apply approaches to research that combine DNA biorepositories with electronic medical record (EMR) systems for large-scale, high-throughput genetic research. One of the major ethical and administrative challenges for the eMERGE Consortium has been complying with existing data-sharing policies. This paper discusses the challenges of sharing genomic data linked to health information in the electronic medical record (EMR) and explores the issues as they relate to sharing both within a large consortium and in compliance with the National Institutes of Health (NIH) data-sharing policy. We use the eMERGE Consortium experience to explore data-sharing challenges from the perspective of multiple stakeholders (i.e., research participants, investigators, and research institutions), provide recommendations for researchers and institutions, and call for clearer guidance from the NIH regarding ethical implementation of its data-sharing policy.